Below are the very first emails that I sent out when we found out something was wrong with Max. I hadn't started the blog yet, so I thought I would post the first set of updates that were sent out in those beginning days. I didn't edit anything so excuse the typos and the lack of knowledge :)
Sent on January 30, 2008:
I don't know if you have heard or not, but we went for an ultrasound on Monday and found out that our little boy is having some complications. His bladder and both kidneys are engorged with urine which means that he is not producing enough amniotic fluid to help develop his lungs. So, we went for another ultrasound yesterday and they diagnosed him with Posterior Urethral Valve Syndrome. All that is causing this havoc is a flap of tissue blocking the tube in his penis to allow the urine flow which is causing it to fill his bladder and back flow into his kidneys. We go tomorrow (Thursday) for a bladder tap- they will insert a needle through my belly into his bladder to drain the fluid which they will then send for a urinalysis. On Friday I will go for an ultrasound to see if his bladder is filling back up. If it is, then we move on to the next step. If it doesn't that means that his kidneys are failing and there is nothing else that they can do to help him. Tim and I are very positive that his little kidneys are still functioning. So once we see his little bladder full of pee on Friday we go for another bladder tap on Monday. This will show whether we have full kidney function or partial (you CAN survive on less than 100% kidney function). Once this is done we will go (I am assuming sometime next week) for a bladder shunt. For this procedure they will give me an epidural and insert a device the width of a pen into my belly to place the shunt into his bladder so that it will drain into his completely dry amniotic sac. Once they do this I will have to be seen ONCE A WEEK for the remainder of the pregnancy to be sure that he hasn't pulled the shunt out or that it hasn't fallen out. If this is the case we start over with replacing the shunt. Once he is born we will then have surgery to remove that stinking flap of tissue so that he can pee on his own.
His heart and brain look great from the ultrasound. The doctor said that his chest cavity is measuring about a week behind, but she isn't too worried about this because is heart is in proportion to his chest size. We are staying positive that since is heart and heartbeat look good this may mean that the kidneys are still functioning. (We don't know if this is an accurate assumption though.)
With all of that said, we need all of the prayer that we can get. Once we know for sure that his kidneys are functioning (PLEASE GOD!) then, in our opinion, we are on our way to a healthy baby boy.
Also, Tony II and my dad DO NOT want to know what we are having so if you talk to them don't mention a baby boy!
Please keep us in your prayers that all goes well and that Baby Max is a strong fighter! We will keep you updated once we find anything out.
If you could please pass this onto anyone that I may have forgotten. I don't have Lou and Nancy's or Dianne's email address handy if someone could pass this on to them.
All of our love,
Beth, Tim and Max
Sent on February 5, 2008:
We have started the week out with more tests. Friday's results came back a little better than the first set and Monday's results came back a little better as well (except for the protein levels in his urine). Today (Tuesday) I was called in for another (fourth) bladder tap to see if the protein levels got worse because of the urine sitting in his bladder all weekend. We will have those results tomorrow. As of right now, Tim and I are feeling pretty hopeful that this little man may have a chance at life. We have a fetal MRI and a fetal care evaluation set up for Monday the 11th- which to us seems like a long wait to be getting this ball rolling, but it was the soonest Children's could get us in. The MRI's results will then be combined with the results of the 4 bladder taps to determine how much damage has been done to the kidneys. We will then sit down with the urologist, the open fetal surgeon and a whole bunch of other doctors and counselors to discuss what our options are.
As of right now we do not know the condition of his kidneys or lungs. The doctor we saw today mentioned that, just from what he can tell on the ultrasound, that his kidneys will not function properly for long term use, which would mean a transplant. I don't know what "long term" means though. I will be getting a phone call tomorrow (Wednesday) with the results from today's test and hopefully some more information for what this could all mean for Max.
Please keep us in your prayers that all goes well over the next week or so. We appreciate all of the phone calls, thoughts and prayers that we have been showered with over the past week and a half. Thank you to everyone! We will keep you updated as we receive new information.
Beth, Tim and Max
Sent on February 11, 2008:
We have a lot to let you all know about from our visit to Children's Hospital today. We started the day at 6:30 in the morning for a MRI of the baby to get a good look at his lungs, kidneys and bladder. His lungs are only right above average for size at this point in the pregnancy. In other words they are on the small side, but still on the low end of "average." Not great but not horrible news at this point. His kidneys are extremely enlarged but are not showing any cysts or increased echogencity (brightness to the kidneys). This is a good sign that we still have some kidney function. We were told that his case is "severe" and were given some options. We could move forward and place a shunt like I mentioned in a previous email or we could do the open fetal surgery. This is where it gets VERY scary! We have opted to move on and do open fetal surgery. The surgeon told us that the shunt, in his case, would only help develop the lungs more so than help the kidneys. The shunt needs a descent amount of pressure in the bladder to force the urine out into the amniotic sac in order to fill it up, but his pressure is building up into his kidneys instead. This could cause more damage to his kidneys since there wouldn't be as much relief as we would like. The shunt would also have to be reinserting usually about every 2 weeks, which increases a risk for both of us. The open fetal surgery is VERY risky to myself and to Max as well, but we truly feel that this is the best option for Max to have a chance at life. With the surgery, his lungs will have a much better chance for development and there will not be any added damage to his kidneys and bladder. The process of the surgery is this: they will perform a "c-section" and deliver only his bottom half. They will then cut about a 1 inch incision into his lower abdomen and then into his bladder. They will sew the flaps from his bladder to his skin to keep the bladder open for drainage. This will mean that he will be born with a small hole in his belly that will be closed shortly after birth. He will then have a catheter inserted until he is strong enough and big enough to have the obstruction removed. One of the risks that this surgery has is preterm labor. They usually expect the baby to be 8-10 weeks early. I will be on bed rest after the surgery until we deliver. The surgery will happen this coming Wednesday (Feb. 13) around 11am at Children's Hospital. I will recover there from 3-5 days and then sent home. They will have to see me anywhere from 1-2 times per week until we deliver at Good Sam to make sure everything is looking good and developing properly.
We will be the 3rd open fetal surgery done in Cincinnati and only about the 9th in the US. There have been some successes, but there isn't enough data to give statistics on it. The doctors and surgeons that are involved are very knowledgeable and seem to be pretty optimistic this is the best route to go.
This is a ton of information and I am sorry if it is all confusing- it has been a VERY long day :o) Tim and I are extremely nervous and scared, but like I said before we think this is the best thing for us to do. We appreciate and love each and every one of you for all of the thoughts and prayers that you have give to us. We are truly, truly blessed to have each of you in our lives. Please, please, please keep us in your prayers for a little while longer that all goes well during the surgery and that this little man stays in the oven until at least the end of April or May.
All of our love and thanks,
Beth, Tim and Max
Sent on February 19, 2008:
We got home from the hospital yesterday (Monday) and all went well with the surgery last Wednesday. The doctor's said that the ultrasound they did on Thursday couldn't have looked any better. It looks to be that Max is producing some urine on his own and there are already some pockets of fluid around him the in the amniotic sac to help develop his lungs. We won't really know what kind of kidney function Max has until after he is born and they can do some blood work on him. The urologist that sat in on the surgery went ahead and poked a hole in the flap of tissue that was blocking his urine flow. This may mean that they won't have to do this after he is born, but we won't know until then. As soon as I woke up in the recovery room all of the nurses said that his feet are very cute!!! I can't wait until I get to see them!
I am doing pretty well. I am a little tender, but it gets better every day. Max is loving that he now has some fluid to swim in. He is moving around like crazy which is so awesome to feel! Tim actually got to feel it for the first time tonight- it was priceless to see his face when we felt his first kick.
I go back to the doctor on Thursday for another ultrasound to make sure all is continuing to go well. The doctor's told me that the hard part now is to keep me pregnant, so that is our new goal! We have to keep him in there for hopefully another 10 weeks, but I am shooting for 12. This would put me at 35 weeks pregnant when we would deliver.
Anyway, we are very happy with the results of the surgery and are very glad that we took that route. We truly believe that this little boy is going to surprise all of us and grow up to be a very strong and determined young man. He is our little miracle baby! Thanks again to everyone for all that you have done for us. Please continue will of all of the prayers that you have been blessing us with- they are helping! We will keep you all updated as new information is given to us.
If you have any questions please call. I will be here at home on my lovely couch searching the web and watching a ton of movies!
Thanks again for everything!
Love and thanks,
Beth, Tim, and Max
Sent on March 5, 2008:
It has been three weeks since our surgery and everything is going pretty well. I had a doctor's appointment last Monday and Max is measuring right on target and weighing in at 1 pound 12 ounces! The only concern was that his amniotic fluid levels weren't increasing, so I was told that if they didn't increase by my next appointment (Today) that I was going to be put into the hospital on IV's. I was told to increase my water intake to see if it would help any. So for a week and a half I have been downing nearly 2 gallons of water/fluids a day. I am serious when I say nearly 2 GALLONS!!! I went in today for another ultrasound and his fluid levels did go up a little bit, so I got to come back home- thank goodness! They just said that we will continue to monitor his levels every week to make sure they are increasing. I will continue with drinking my water in hopes that it continues to help!
I am getting a lot finished while I sit here throughout the week. We have received our stroller and carseat, Max's bedding and his furniture! Now we just have to start the nursery so that we can get all of it out of the living room. Tim has said that the house is being taken over by baby stuff and that he will eventually be completely pushed out of the upstairs to the basement.
It has been a pretty quiet 3 weeks so I don't have too much to report. Please keep those prayers coming that he continues to bake for another 9+ weeks. Once again, we want to thank everyone for their prayers, love and support! We wouldn't be here without each and everyone of you!
Lots of Love,
Beth, Tim and Max
Sent on March 20, 2008:
Hello to all!!!
I will be 28 weeks tomorrow and still pregnant!!! I still have awhile to go but am feeling wonderful and confident that we will make it to 35 weeks or so. We had an ultrasound and an office visit yesterday. The ultrasound showed that Max's heart rate is still perfect and strong and that his amniotic fluid levels have increased over the past 2 weeks! The two measurable pockets that they spotted totaled 3.4 cm of fluid. It seems very low, which it is, but the doctors like to see one pocket at 2cm to see a positive result for lung development. We have this! So woo hoo for Max!
I went into this appointment very nervous because the doctor that I was seeing is the one that Tim and I are not fond of at all. He has no bedside manner and answers questions with one word. But to my surprise after he listened to Max's heartbeat and measured my belly (all is right on schedule) we both sat down and talked about my questions and what tests I would be doing in the upcoming weeks. Needless to say I left the appointment in very good spirits.
Other than Max's increase in fluid this week, I did get the news that I will be going to the doctors twice a week from here on out for None Stress Tests (NST). Next week is my last week at only going on Wednesdays. I will then go every Monday and Thursday for the usual ultrasound to check fluid levels once a week and for NSTs on both days. Good news here: I get out of the house two times a week instead of one!!!!!! WOOHOO!
I guess that is all I have to report. I can't wait to share some more good news when I hit 30 weeks!
Thanks again for all of the love, support and prayers!!!!
Love and much thanks,
Tim, Beth and Max
Sent on March 31, 2008:
Well I went in for one of our two appointments today and it ends up that I am not going home until Max is born :o( The doctor isn't happy with his fluid levels, so they have me on IV fluids to see if they will increase. They will also monitor Max's heartrate 3 times a day to make sure that all sounds good and one of those will include a none stress test. His concern is that the bigger Max gets the higher the risk of compressing the umbilical cord, which will decrease the amount of blood and oxygen getting to the baby.
The doctor did mention that this is not an emergency of any kind, he just feels more comfortable with me being monitored here at the hospital than coming in twice a week. He did mention that depending on how things go that there is a chance of him taking the baby by the end of the week, but he definitely thinks that Max will be here by the end of April. With that said, they will be giving me a dose of steroids tonight and tomorrow to help his lungs develop a little more before he is born. The doctors said that Max will let them know when he is ready to be born, so they are going to base everything on him and how he "communicates" to us.
Once again, please keep us in your prayers that all goes well and that Max decides that he isn't ready until the end of the month. We greatly appreciate all that you have done for us over the past 2 months. We are truly, truly blessed to have each and every one of you in our lives.
Please feel free to call me while I am here in the hospital. I will keep you all updated more often as I will now have even more time on my hands!
All of our love and thanks,
Beth, Tim and Max
It's kind of fun to look back and see where we were at this exact moment 3 years ago.
Thank you to all that have followed us throughout the past 3 years. Your thoughts and prayers are greatly appreciated. Here's to many, many more years of fun and encouraging updates on our growing family.
Beth, Tim, Max and Baby L.
February 13, 2011
Three years ago today our son's life was saved. Some may say that I am the hero in this story, but in our eyes, the true heroes are the doctors that performed this miraculous surgery. We were only the 6th in the country and the 3rd in the Tri-State area to have this particular surgery done. How's that for statistics?
I remember both vaguely and clearly how February 13, 2008 went. Tim and I arrived early that Wednesday morning. I got into my hospital gown and had my IV placed. I sat on the bed in our room and waited. Mine and Tim's parents arrived in the meantime and waited with us. Before we went down to the OR waiting room the chaplain came in and said a prayer over myself and our unborn son. We were then wheeled down to the holding area where I was prepped for surgery. A nurse walked in and I couldn't place where I knew her from, but Tim knew right away. Although I didn't know this particular person very well, it was comforting to know that a familiar face was going to be in the OR with me. Anyway, they had me drink a shot of some very tart medication that helps with nausea. Then they gave me some versed through my IV to help calm my nerves. This medication makes you feel like you have a really, really good buzz (or at least that's what they told me since I don't drink). The rest was a blur, but I do remember getting into the OR, sitting on the table and leaning over a nurse while the anesthesiologist put in my epidural. Then I laid down and was told they were going to give me some oxygen. Yeah, that oxygen had a little something in it because I don't remember anything else.
I woke up in recovery and the first thing I remember was the nurses telling me how cute the baby's feet are. I managed to tell them that it wasn't fair that they got to see him before me. That's all I remember.
I was hooked up to several medications. I was contracting so they had to do all that they could to keep me from going into labor so most of the medications were to stop that from happening. They had me on Magnesium, which in my opinion, was created my the devil himself. Some people this medication gives flu like symptoms to, but in my case it made me extremely HOT. I wasn't allowed to have anything to drink so I had a major case of cotton mouth. Tim had my room set to the coolest temperature the thermostat could go to and I was still burning up. They gave Tim a bucket that he kept ice water in so that he could wrap my in cold wash clothes. I remember sucking on the rag so that I could get the water and tiny ice cubes that were stuck to it. Tim kept telling me that I was going to get in trouble, but I was on day 2 of not having anything to drink. Anyone that came into the room wore twice as many clothes as they normally would because of how cold it was. Tim would get excited when I woke him up in the middle of the night to see if he could get me some colder water for my rags. It meant that he got to go out into the hallway where it was warm. For those wondering how long they made me suffer without anything to drink, it was on day 3 that I finally got the sprite that I was begging them for since I came out of surgery. 3 horrible days of nothing in my mouth, but I survived.
I was discharged 5 days later and spent the next 13 weeks on bedrest (7 at home and 6 in the hospital).
It was three years ago that I got the opportunity to save my son's life. I am not a hero. I am mother.
I am also...